11 ms·

Paper Trails: Living and Dying with Fragmented Medical Records

71 points by anarbadalov 8y ago

maxxxxx 8y ago
I think the ownership of medical records should be reversed. Right now the doctors behave as if they owned the records and the patient has to ask for them. Instead the patient should be the owner of the records to which the doctor gets granted access as needed. All test results, X-rays and everything else should go into the patient's record and owned by the patient.
- nradov 8y ago
  That sounds great in theory. But how could we actually put it into practice? Who will build and maintain that personal health record system and where will the funding come from? Patients are generally unwilling to pay. Google, Microsoft, and Apple have tried to build PHRs to some extent but functionality and adoption have been limited. No one really trusts the government to maintain a big centralized repository of patient data. But decentralized systems are highly complex and prone to breakage. No one has really found a solution yet. Health information exchanges and payers (insurers) have been doing great work lately to facilitate authorized providers sharing data with each other using standard formats such as the formats published by HL7. So that does at least prevent the need for duplicate lab tests and reduce the risk of medication errors.
  - maxxxxx 8y ago
    I agree that it's a very difficult problem but I think it could be solvable if people actually sat down to solve it and could impose standards. At a minimum require all systems to have an export function to a standard. The problem I see is that a lot of the current players in the health system benefit from hidden data and duplicate procedures so it would take a lot of political courage to force them to open up.
    - nradov 8y ago
      Every current EMR / EHR application can export data in standard formats. That's not a significant problem any more. The federal government has effectively already imposed standards compliance as a requirement. The problem is that there is no organization which can provide a stable repository for every patient's data and build secure interfaces to thousands of different provider organizations. That's extremely expensive and there's no real business model. Where will the money come from?
      - dqv 8y ago
        >The problem is that there is no organization which can provide a stable repository for every patient's data and build secure interfaces to thousands of different provider organizations. That's extremely expensive and there's no real business model. Where will the money come from? It would be a cool idea if a non-profit organization could handle it. Healthcare organizations would pay a "duty fee" for requesting or sending records. We just need a standard for transporting it. FHIR makes it de facto HTTPS.
        nradov 8y ago
        You haven't answered the question of where the money will come from. Healthcare provider organizations are generally unwilling to pay such duty fees. HL7 FHIR is great but it does nothing to address the cost structure. This is a political and economic problem, not a technical problem.
        tolien 8y ago
        I suppose the obvious answer is to require them to pay — as you say, it becomes a political problem for politicians to write law mandating it and the providers to lobby for it not to be forced. The closest analogy I can think of is the Data Communications Company that intermediates smart meter data in the UK between the energy suppliers and end users. As a monopoly, their prices are regulated (well or not is a political problem…) and all the providers have to use them. If the data exchange was the source of truth, the providers would presumably save some money not having to store their own copies (or at least, could store more summarised versions) with all the requirements that HIPAA/GDPR entail. However, there’s money to be had for a huge aggregated database of everyone’s health records, stored in consistent format for easy consumption…maybe we should be careful what we wish for.
  - hindsightRegret 8y ago
    The big tech/medical records companies will have to lead the charge here. Imagine that big tech sets the standard, and the hospitals who are abiding by the standard receive an "Apple Health Certified" stamp of approval. These certified hospitals have increased visibility within the curated marketplace and gain greater access to patients. This then naturally creates an incentive for hospitals to catch the standard, lest they be left behind. The tech companies are willing to put in the effort, it gives them access to a new marketplace.
  - fpanettieri 8y ago
    Sounds exactly like a proper use case for a blockchain.
    - maxxxxx 8y ago
      In what way would blockchain solve the problems?
      - arsenico 8y ago
        I think, the idea is the distributed ledger, which allows you to store the information not with a centralised authority, but yourself. Blockchain would not necessarily be a good technological approach, but a distributed ledger, would be.
        nradov 8y ago
        In general the healthcare system can't rely on patients to store their own data. Patients lose devices, forget their passwords, get hacked, etc. Certainly we should make it easier for patients to obtain copies of their medical records but it just isn't feasible to put the patient at the center of the data flow.
    - nradov 8y ago
      This is not a proper use case for blockchain. Blockchain technology is primarily for allowing transactions between parties that don't trust each other. That's not a problem we have in the US healthcare system. Providers are all known and generally licensed by the government. They adhere to strict rules of conduct, and if one of them breaks that trust they are subject to civil and criminal penalties. As a technical matter, no one has yet demonstrated a blockchain that can scale to the amount of data and transaction volume required to maintain a patient chart for everyone in the country. Especially if we include images and genome sequences the data volume is in the exabyte order of magnitude. This is fundamentally a political and economic problem. Throwing immature new technology at it won't solve anything.
      - 8y ago
  - dynofuz 8y ago
    we are working on it at https://1up.health https://1up.health which helps patients or developers aggregate and build on a consolidated medical record. We have a lot of developers making some really cool applications from those for patients with cancer to others helping individuals seeking life insurance with individuals connecting records from multiple health systems (we support 200+). Id love to hear from anyone else building applications in this space.
  - brokenmachine 8y ago
    HL7 is an absolute shitshow. Every company charges 10s of thousands of dollars for every "interface", which is one program sending something to another.
- MrEfficiency 8y ago
  Why not have the clinic store a copy and the patient gets a carbon copy? If something gets questioned, there is another copy somewhere.
  - nradov 8y ago
    Most large healthcare provider organizations already provide patients with online access to their records. Patients can download or print those records, but the problem is that it's still tough to integrate records from multiple different provider organizations in a clinically useful way. Health Information Exchanges (HIEs) solve the problem to some extent by importing data from multiple provider organizations and synthesizing a single longitudinal record for every patient. But not every provider is part of an HIE, and no HIE really covers the whole country.
- troyastorino 8y ago
  Patients do have rights to the records, but as described, it's really hard to actually get them and keep them in a useful, accessible format. We've chimed in a few other parts of comments, but at PicnicHealth this is exactly what we're working on. If you're interested in fixing this problem we'd love to talk.
  - maxxxxx 8y ago
    Sounds like you are trying something very ambitious!
- Engineering-MD 8y ago
  Why do you think they should be owned by patients? I’m not disagreeing with you, it might work but I would appreciate a more pursuasive argument. There are arguments against. Any text written is copyright of the writer, not the person it is written about. Why should the patient own the copyright of that text? Data access is not the same thing as ownership. Additionally, this is not the case for other data held about someone. If you use a lawyer, they own (and don’t provide access to) the notes they make. Same for any other service provider.
  - tcbawo 8y ago
    Treating medicine as a generic, traditional business has done nothing positive for society. There has been a lack of innovation for fear of breaking things, but things are seeming more broken all the time. Maybe we'll start to see some traction.
    - Engineering-MD 8y ago
      I would agree with you, but you don’t really give an argument to say how the proposed alternative is better or the optimal solution.
      - tcbawo 8y ago
        I'm not advocating for patient ownership of medical records. I'm not in the field, so I don't know whether that makes sense. I do know that profit motives tend to backfire in this industry as everyone tries to get theirs before the house of cards comes falling down.
        Engineering-MD 8y ago
        Fair response. I am in the UK, so it’s not profit orientated in any case. It is moving that way to a certain degree, but clinical decisions are based more on what’s good for the patient and in a defensive manner. The opposite effect is in place: reduce costs wherever possible (don’t do tests unless it will change management, don’t treat unless it will improve the patient’s life).
- mariushn 8y ago
  We tried that at http://www.juvmed.com http://www.juvmed.com , nobody cared
  - austinjp 8y ago
    On what research are you basing your list of recommended periodic checkups?
    - mariushn 8y ago
      http://www.juvmed.com/science http://www.juvmed.com/science
  - wiz21c 8y ago
    I certainly do care. Gov't in my country is pushing for an integrated EHR hat looks like yours (except the level of security is much higher 'cose the data are not anonymous), but the way those records are used is a bit shady. But the way it is pushed onto citizens is clearly wrong. Basically the doctor proposes you to switch to that system, citing the advantages, but not the disadvantages... Also, with EHR, "ananymous data" doesn't mean much : your name is always on the papers produced by the doctors :-/ So anonymisation means : either remove identification data, or make sure it doesn't appear first hand. In both cases, in requires an action, and given the scale of the stuff, it won't be practical...
anarbadalov 8y ago
This is a revealing insider's look at what happens when medical records vanish or are mishandled as patients move between physicians. It's also a heart-wrenching story of one patient's journey -- one that should interest anyone who has crossed paths with the American health care system. After all, if they were a disease, medical errors would rank as the third leading cause of death in the U.S., right behind heart disease and cancer.
- someguydave 8y ago
  This is a great point. Medical researchers would do well to stop harassing people about their lifestyle (it's not obvious much headway can be made there anyway) and focus instead on the crazy number of deaths caused by interactions with doctors and hospitals.
  - nradov 8y ago
    Medical researchers generally aren't harassing people about lifestyle issues. The concerns over lifestyle come more from practicing physicians, politicians, bureaucrats, employers, and economists. As a population we are increasingly killing ourselves with overeating, substance abuse, and lack of physical activity. Unless we can get a better handle on lifestyle issues then the healthcare system is going to collapse and there won't be much that medical researchers can do about it.
    - someguydave 8y ago
      Cool story bro. Show me the randomized lifestyle intervention trials that actually improved mortality outcomes for heart disease, and I'll believe you.
      - phren0logy 8y ago
        https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2995494/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2995494/ Something more direct, with results related to actual event/non-event cardiovascular outcomes, would be ideal. It's also crazy complicated and expensive, so it's reasonable to extrapolate. Unless you didn't really want data, and had already made up your mind.
nwhatt 8y ago
This is heartbreaking. As someone at the core of the technology trying to correct some of these problems, the biggest problem is the fragmentation of the market. This is the government certification data for inpatient software: https://dashboard.healthit.gov/quickstats/pages/2015-edition-market-readiness-hospitals-clinicians.php https://dashboard.healthit.gov/quickstats/pages/2015-edition... The long tail of software products makes connecting everything exponentially harder.
howard941 8y ago
My MD sold his practice and when I showed up at the vendee he told me not only didn't he have the 4 inch thick plus paper-only but also that a) it wasn't yet scanned and b) he wasn't even sure where the file, much less when the poor assistant in the office was going to scan it.
nradov 8y ago
From a purely technical standpoint the HL7 Continuity of Care Document (CCD) is intended to address this issue by allowing a provider to put a summary of a patient's entire chart (including a plan for future care) in a single XML file and then give that to another provider when transferring care. It works well when properly implemented, but unfortunately many healthcare providers haven't done so completely yet. There are also practical problems in just moving the file from one provider to another. http://www.hl7.org/implement/standards/product_brief.cfm?product_id=408 http://www.hl7.org/implement/standards/product_brief.cfm?pro...
- athenot 8y ago
  The CCD, though a standard, is far from a univeral bridge. You can represent the same things in different ways, use different vocabularies. Even if you standardize on the "blessed vocabularies" you still have many ways to code the same thing. So a CCD produced by Nextgen won't always come into Epic the way it's intended (not picking on those 2, just an example). I've come to realize that even though the CCD tries to be all things to all people, it suffes from the same issue as many of the vocabularies themselves: data precision is an afterthough. Clinical informatics lives in a utopia where everything is precisely represented and perfectly documented. Actual clinicals deal with partially-known information, imprecise or unrefined representation of diagnosises, procedures, meds, etc; and just have to make the best with what they have.
  - nradov 8y ago
    That's true to an extent, but in practice the problems aren't too serious if everyone follows the C-CDA 2.1 CCD specification. It standardizes the vocabularies in each section so, for example at least you can be sure that prescriptions were coded with RxNorm. But certainly testing is needed to ensure proper end-to-end interoperability. And of course if the users don't enter the data correctly in the first place then no interchange format can fix that.
  - troyastorino 8y ago
    The problems with the CCD (having so many different ways to represent the same thing, having a different flavor for each system) are unfortunately passed down to new iterations of healthcare standards. New standards (like FHIR) are designed to fix problems with older standards, but then when it comes to implementation they are built to be backward compatible with the older standards, and so inherit some of the same problems (in this case, the ambiguity of representation).
davycro 8y ago
I needed medical records from a hospital across town for a patient on my shift last night. Unit clerk called the hospital to request records. They then printed about 60 pages from their electronic record. Those pages were faxed to our department. Our unit clerk scanned the printed pages from our fax machine into our electronic record. Some patient notes are a scan of a fax of a scan of a fax.
- _pastel 8y ago
  This is a perfect explanation of why OCR of medical records is so difficult. As an engineer working on this, it's frustrating that the computer vision research community treats document OCR as a solved problem. New papers and competitions are exclusively in fancy settings, like slanted text outdoors on a busy street, or handwritten Urdu with only a small set of training labels. Meanwhile our medical data is locked up in a scan of a fax of a scan of a fax, with a mixture of printed text and handwritten notes, with table lines crossing the text. Paid services like Google's Cloud Vision API struggle at best, and the best available open source software (tesseract) isn't even close.
- lostlogin 8y ago
  I regularly deal with printed out referral forms that are photographs of the original with a steering wheel and traffic in the background.
msamwald 8y ago
I wonder if current attempts at EHR interoperability are a case of "the perfect is the enemy of the good". Obviously the ideal solution would be one where well-structured interoperable datasets are produced and shared. This would enable very targeted analysis of patient data, and sophisticated clinical decision support functionality. However, it seems like this is still not happening, and the convoluted nature of many HL7 standards is certainly not helping. So I've come to think that it would actually be preferable to put most of the health data into PDF-like documents, and focus on optimizing the accessibility of the data through good full-text document search that can assemble an overview by showing document snippets (i.e., allowing to get a broad cross-document overview through document previews, rather than requiring opening each document individually). I guess some kind of especially important data, such as information on current medication or drug intolerance should really be kept in a fully structured format to enable clinical decision support, but for a lot of other information, a light-weight system based on unstructured data combined with good information retrieval tools would already improve on the status quo quite significantly.
- akira2501 8y ago
  > So I've come to think that it would actually be preferable to put most of the health data into PDF-like documents I've thought about this before and came to nearly the same conclusion. It would also help in extremes, allowing doctors to switch back to pure paper should the situation call for it while allowing for that information to be smoothly integrated back into the system once it becomes available again. What good is an EHR if the power is out? > I guess some kind of especially important data, such as information on current medication or drug intolerance should really be kept in a fully structured format to enable clinical decision support Which may help, but as detailed by this article the process of ordering healthcare and the eventual delivery of that care to the patient is often a patchwork of multiple departments and staff with ample opportunities for error anyways. I used to volunteer in the pharmacy. We'd get an order for a medication. We'd fill and then label that medication. It would then go into a bin on a cart, one bin for each department in the hospital. The cart would go out, and the bins would get delivered. The medication would then be stocked in the department using a slightly different setup for each department. Then the nurses would have their own individual processes for getting that medication, taking it to the patient and then delivering it to them. An EHR is _one_ very small part of successfully performing this complicated ballet.
spalas 8y ago
This article clearly describes the challenges we are trying to solve at https://picnichealth.com/ https://picnichealth.com/ (YC S14). Our goal is to take the burden of compiling and maintaining a complete medical history off of the patient while at the same time providing them with the utility of having access to and the ability to seamlessly share their records with future doctors. Given the current state of EHR systems (and their lack of interoperability) this often means dropping into the world of faxes and paper. To deal with this we have built up systems for requesting, re-digitizing, structuring, and validating medical records (in whatever format we receive them). If you are interested in working with us to address these challenges, we are hiring in a variety of roles: https://team.picnichealth.com/jobs https://team.picnichealth.com/jobs
- troyastorino 8y ago
  Adding on as one of the PicnicHealth founders. Unfortunately, the kind of experiences described are extremely common in transfer-of-care settings. When we were starting PicnicHealth, my grandfather was in-and-out of several different ICUs. Preventable mistakes when moving between facilities and providers — inadvertently changed medication dosages, missed therapy regimens, un-transferred test results — created health emergencies that kept pushing him back further and further from recovery. He ultimately passed away. We had these problems around information management and transfer even though my dad (my grandfather's son) is a doctor, and was continuously in touch with the different care teams. Without a central, complete source of information, things will always get missed. Patients and doctors deserve solutions to this problem today. Like the author said, you can only piece together a patient's medical history if you're willing to deal with records in any form, including faxing and scanning paper and mailing CDs. It's hard, dirty work, but it's the only way to get everything together. PicnicHealth does this so patients don't have to. And gathering the records is actually just the first part —you need to structure and normalize information in the different records so it's possible to do things like view trends and use control-find. Full electronic interoperability is slowly coming, but it's been slowly coming for more than 20 years. I would be shocked if in 10 years faxes aren't still being sent. We need to push to make interoperability happen as quickly as possible, but in the meantime patients and their care can't wait.

71 points by anarbadalov 8y ago

I think the ownership of medical records should be reversed. Right now the doctors behave as if they owned the records and the patient has to ask for them. Instead the patient should be the owner of the records to which the doctor gets granted access as needed. All test results, X-rays and everything else should go into the patient's record and owned by the patient.

nradov 8y ago
That sounds great in theory. But how could we actually put it into practice? Who will build and maintain that personal health record system and where will the funding come from? Patients are generally unwilling to pay. Google, Microsoft, and Apple have tried to build PHRs to some extent but functionality and adoption have been limited. No one really trusts the government to maintain a big centralized repository of patient data. But decentralized systems are highly complex and prone to breakage. No one has really found a solution yet. Health information exchanges and payers (insurers) have been doing great work lately to facilitate authorized providers sharing data with each other using standard formats such as the formats published by HL7. So that does at least prevent the need for duplicate lab tests and reduce the risk of medication errors.
- maxxxxx 8y ago
  I agree that it's a very difficult problem but I think it could be solvable if people actually sat down to solve it and could impose standards. At a minimum require all systems to have an export function to a standard. The problem I see is that a lot of the current players in the health system benefit from hidden data and duplicate procedures so it would take a lot of political courage to force them to open up.
  - nradov 8y ago
    Every current EMR / EHR application can export data in standard formats. That's not a significant problem any more. The federal government has effectively already imposed standards compliance as a requirement. The problem is that there is no organization which can provide a stable repository for every patient's data and build secure interfaces to thousands of different provider organizations. That's extremely expensive and there's no real business model. Where will the money come from?
    - dqv 8y ago
      >The problem is that there is no organization which can provide a stable repository for every patient's data and build secure interfaces to thousands of different provider organizations. That's extremely expensive and there's no real business model. Where will the money come from? It would be a cool idea if a non-profit organization could handle it. Healthcare organizations would pay a "duty fee" for requesting or sending records. We just need a standard for transporting it. FHIR makes it de facto HTTPS.
      - nradov 8y ago
        You haven't answered the question of where the money will come from. Healthcare provider organizations are generally unwilling to pay such duty fees. HL7 FHIR is great but it does nothing to address the cost structure. This is a political and economic problem, not a technical problem.
        tolien 8y ago
        I suppose the obvious answer is to require them to pay — as you say, it becomes a political problem for politicians to write law mandating it and the providers to lobby for it not to be forced. The closest analogy I can think of is the Data Communications Company that intermediates smart meter data in the UK between the energy suppliers and end users. As a monopoly, their prices are regulated (well or not is a political problem…) and all the providers have to use them. If the data exchange was the source of truth, the providers would presumably save some money not having to store their own copies (or at least, could store more summarised versions) with all the requirements that HIPAA/GDPR entail. However, there’s money to be had for a huge aggregated database of everyone’s health records, stored in consistent format for easy consumption…maybe we should be careful what we wish for.
- hindsightRegret 8y ago
  The big tech/medical records companies will have to lead the charge here. Imagine that big tech sets the standard, and the hospitals who are abiding by the standard receive an "Apple Health Certified" stamp of approval. These certified hospitals have increased visibility within the curated marketplace and gain greater access to patients. This then naturally creates an incentive for hospitals to catch the standard, lest they be left behind. The tech companies are willing to put in the effort, it gives them access to a new marketplace.
- fpanettieri 8y ago
  Sounds exactly like a proper use case for a blockchain.
  - maxxxxx 8y ago
    In what way would blockchain solve the problems?
    - arsenico 8y ago
      I think, the idea is the distributed ledger, which allows you to store the information not with a centralised authority, but yourself. Blockchain would not necessarily be a good technological approach, but a distributed ledger, would be.
      - nradov 8y ago
        In general the healthcare system can't rely on patients to store their own data. Patients lose devices, forget their passwords, get hacked, etc. Certainly we should make it easier for patients to obtain copies of their medical records but it just isn't feasible to put the patient at the center of the data flow.
  - nradov 8y ago
    This is not a proper use case for blockchain. Blockchain technology is primarily for allowing transactions between parties that don't trust each other. That's not a problem we have in the US healthcare system. Providers are all known and generally licensed by the government. They adhere to strict rules of conduct, and if one of them breaks that trust they are subject to civil and criminal penalties. As a technical matter, no one has yet demonstrated a blockchain that can scale to the amount of data and transaction volume required to maintain a patient chart for everyone in the country. Especially if we include images and genome sequences the data volume is in the exabyte order of magnitude. This is fundamentally a political and economic problem. Throwing immature new technology at it won't solve anything.
    - 8y ago
- dynofuz 8y ago
  we are working on it at https://1up.health https://1up.health which helps patients or developers aggregate and build on a consolidated medical record. We have a lot of developers making some really cool applications from those for patients with cancer to others helping individuals seeking life insurance with individuals connecting records from multiple health systems (we support 200+). Id love to hear from anyone else building applications in this space.
- brokenmachine 8y ago
  HL7 is an absolute shitshow. Every company charges 10s of thousands of dollars for every "interface", which is one program sending something to another.
MrEfficiency 8y ago
Why not have the clinic store a copy and the patient gets a carbon copy? If something gets questioned, there is another copy somewhere.
- nradov 8y ago
  Most large healthcare provider organizations already provide patients with online access to their records. Patients can download or print those records, but the problem is that it's still tough to integrate records from multiple different provider organizations in a clinically useful way. Health Information Exchanges (HIEs) solve the problem to some extent by importing data from multiple provider organizations and synthesizing a single longitudinal record for every patient. But not every provider is part of an HIE, and no HIE really covers the whole country.
troyastorino 8y ago
Patients do have rights to the records, but as described, it's really hard to actually get them and keep them in a useful, accessible format. We've chimed in a few other parts of comments, but at PicnicHealth this is exactly what we're working on. If you're interested in fixing this problem we'd love to talk.
- maxxxxx 8y ago
  Sounds like you are trying something very ambitious!
Engineering-MD 8y ago
Why do you think they should be owned by patients? I’m not disagreeing with you, it might work but I would appreciate a more pursuasive argument. There are arguments against. Any text written is copyright of the writer, not the person it is written about. Why should the patient own the copyright of that text? Data access is not the same thing as ownership. Additionally, this is not the case for other data held about someone. If you use a lawyer, they own (and don’t provide access to) the notes they make. Same for any other service provider.
- tcbawo 8y ago
  Treating medicine as a generic, traditional business has done nothing positive for society. There has been a lack of innovation for fear of breaking things, but things are seeming more broken all the time. Maybe we'll start to see some traction.
  - Engineering-MD 8y ago
    I would agree with you, but you don’t really give an argument to say how the proposed alternative is better or the optimal solution.
    - tcbawo 8y ago
      I'm not advocating for patient ownership of medical records. I'm not in the field, so I don't know whether that makes sense. I do know that profit motives tend to backfire in this industry as everyone tries to get theirs before the house of cards comes falling down.
      - Engineering-MD 8y ago
        Fair response. I am in the UK, so it’s not profit orientated in any case. It is moving that way to a certain degree, but clinical decisions are based more on what’s good for the patient and in a defensive manner. The opposite effect is in place: reduce costs wherever possible (don’t do tests unless it will change management, don’t treat unless it will improve the patient’s life).
mariushn 8y ago
We tried that at http://www.juvmed.com http://www.juvmed.com , nobody cared
- austinjp 8y ago
  On what research are you basing your list of recommended periodic checkups?
  - mariushn 8y ago
    http://www.juvmed.com/science http://www.juvmed.com/science
- wiz21c 8y ago
  I certainly do care. Gov't in my country is pushing for an integrated EHR hat looks like yours (except the level of security is much higher 'cose the data are not anonymous), but the way those records are used is a bit shady. But the way it is pushed onto citizens is clearly wrong. Basically the doctor proposes you to switch to that system, citing the advantages, but not the disadvantages... Also, with EHR, "ananymous data" doesn't mean much : your name is always on the papers produced by the doctors :-/ So anonymisation means : either remove identification data, or make sure it doesn't appear first hand. In both cases, in requires an action, and given the scale of the stuff, it won't be practical...

anarbadalov 8y ago

This is a revealing insider's look at what happens when medical records vanish or are mishandled as patients move between physicians. It's also a heart-wrenching story of one patient's journey -- one that should interest anyone who has crossed paths with the American health care system. After all, if they were a disease, medical errors would rank as the third leading cause of death in the U.S., right behind heart disease and cancer.

someguydave 8y ago
This is a great point. Medical researchers would do well to stop harassing people about their lifestyle (it's not obvious much headway can be made there anyway) and focus instead on the crazy number of deaths caused by interactions with doctors and hospitals.
- nradov 8y ago
  Medical researchers generally aren't harassing people about lifestyle issues. The concerns over lifestyle come more from practicing physicians, politicians, bureaucrats, employers, and economists. As a population we are increasingly killing ourselves with overeating, substance abuse, and lack of physical activity. Unless we can get a better handle on lifestyle issues then the healthcare system is going to collapse and there won't be much that medical researchers can do about it.
  - someguydave 8y ago
    Cool story bro. Show me the randomized lifestyle intervention trials that actually improved mortality outcomes for heart disease, and I'll believe you.
    - phren0logy 8y ago
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2995494/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2995494/ Something more direct, with results related to actual event/non-event cardiovascular outcomes, would be ideal. It's also crazy complicated and expensive, so it's reasonable to extrapolate. Unless you didn't really want data, and had already made up your mind.

nwhatt 8y ago

This is heartbreaking. As someone at the core of the technology trying to correct some of these problems, the biggest problem is the fragmentation of the market. This is the government certification data for inpatient software: https://dashboard.healthit.gov/quickstats/pages/2015-edition-market-readiness-hospitals-clinicians.php https://dashboard.healthit.gov/quickstats/pages/2015-edition... The long tail of software products makes connecting everything exponentially harder.

howard941 8y ago

My MD sold his practice and when I showed up at the vendee he told me not only didn't he have the 4 inch thick plus paper-only but also that a) it wasn't yet scanned and b) he wasn't even sure where the file, much less when the poor assistant in the office was going to scan it.

nradov 8y ago

From a purely technical standpoint the HL7 Continuity of Care Document (CCD) is intended to address this issue by allowing a provider to put a summary of a patient's entire chart (including a plan for future care) in a single XML file and then give that to another provider when transferring care. It works well when properly implemented, but unfortunately many healthcare providers haven't done so completely yet. There are also practical problems in just moving the file from one provider to another. http://www.hl7.org/implement/standards/product_brief.cfm?product_id=408 http://www.hl7.org/implement/standards/product_brief.cfm?pro...

athenot 8y ago
The CCD, though a standard, is far from a univeral bridge. You can represent the same things in different ways, use different vocabularies. Even if you standardize on the "blessed vocabularies" you still have many ways to code the same thing. So a CCD produced by Nextgen won't always come into Epic the way it's intended (not picking on those 2, just an example). I've come to realize that even though the CCD tries to be all things to all people, it suffes from the same issue as many of the vocabularies themselves: data precision is an afterthough. Clinical informatics lives in a utopia where everything is precisely represented and perfectly documented. Actual clinicals deal with partially-known information, imprecise or unrefined representation of diagnosises, procedures, meds, etc; and just have to make the best with what they have.
- nradov 8y ago
  That's true to an extent, but in practice the problems aren't too serious if everyone follows the C-CDA 2.1 CCD specification. It standardizes the vocabularies in each section so, for example at least you can be sure that prescriptions were coded with RxNorm. But certainly testing is needed to ensure proper end-to-end interoperability. And of course if the users don't enter the data correctly in the first place then no interchange format can fix that.
- troyastorino 8y ago
  The problems with the CCD (having so many different ways to represent the same thing, having a different flavor for each system) are unfortunately passed down to new iterations of healthcare standards. New standards (like FHIR) are designed to fix problems with older standards, but then when it comes to implementation they are built to be backward compatible with the older standards, and so inherit some of the same problems (in this case, the ambiguity of representation).

davycro 8y ago

I needed medical records from a hospital across town for a patient on my shift last night. Unit clerk called the hospital to request records. They then printed about 60 pages from their electronic record. Those pages were faxed to our department. Our unit clerk scanned the printed pages from our fax machine into our electronic record. Some patient notes are a scan of a fax of a scan of a fax.

_pastel 8y ago
This is a perfect explanation of why OCR of medical records is so difficult. As an engineer working on this, it's frustrating that the computer vision research community treats document OCR as a solved problem. New papers and competitions are exclusively in fancy settings, like slanted text outdoors on a busy street, or handwritten Urdu with only a small set of training labels. Meanwhile our medical data is locked up in a scan of a fax of a scan of a fax, with a mixture of printed text and handwritten notes, with table lines crossing the text. Paid services like Google's Cloud Vision API struggle at best, and the best available open source software (tesseract) isn't even close.
lostlogin 8y ago
I regularly deal with printed out referral forms that are photographs of the original with a steering wheel and traffic in the background.

msamwald 8y ago

I wonder if current attempts at EHR interoperability are a case of "the perfect is the enemy of the good". Obviously the ideal solution would be one where well-structured interoperable datasets are produced and shared. This would enable very targeted analysis of patient data, and sophisticated clinical decision support functionality. However, it seems like this is still not happening, and the convoluted nature of many HL7 standards is certainly not helping. So I've come to think that it would actually be preferable to put most of the health data into PDF-like documents, and focus on optimizing the accessibility of the data through good full-text document search that can assemble an overview by showing document snippets (i.e., allowing to get a broad cross-document overview through document previews, rather than requiring opening each document individually). I guess some kind of especially important data, such as information on current medication or drug intolerance should really be kept in a fully structured format to enable clinical decision support, but for a lot of other information, a light-weight system based on unstructured data combined with good information retrieval tools would already improve on the status quo quite significantly.

akira2501 8y ago
> So I've come to think that it would actually be preferable to put most of the health data into PDF-like documents I've thought about this before and came to nearly the same conclusion. It would also help in extremes, allowing doctors to switch back to pure paper should the situation call for it while allowing for that information to be smoothly integrated back into the system once it becomes available again. What good is an EHR if the power is out? > I guess some kind of especially important data, such as information on current medication or drug intolerance should really be kept in a fully structured format to enable clinical decision support Which may help, but as detailed by this article the process of ordering healthcare and the eventual delivery of that care to the patient is often a patchwork of multiple departments and staff with ample opportunities for error anyways. I used to volunteer in the pharmacy. We'd get an order for a medication. We'd fill and then label that medication. It would then go into a bin on a cart, one bin for each department in the hospital. The cart would go out, and the bins would get delivered. The medication would then be stocked in the department using a slightly different setup for each department. Then the nurses would have their own individual processes for getting that medication, taking it to the patient and then delivering it to them. An EHR is _one_ very small part of successfully performing this complicated ballet.

spalas 8y ago

This article clearly describes the challenges we are trying to solve at https://picnichealth.com/ https://picnichealth.com/ (YC S14). Our goal is to take the burden of compiling and maintaining a complete medical history off of the patient while at the same time providing them with the utility of having access to and the ability to seamlessly share their records with future doctors. Given the current state of EHR systems (and their lack of interoperability) this often means dropping into the world of faxes and paper. To deal with this we have built up systems for requesting, re-digitizing, structuring, and validating medical records (in whatever format we receive them). If you are interested in working with us to address these challenges, we are hiring in a variety of roles: https://team.picnichealth.com/jobs https://team.picnichealth.com/jobs

troyastorino 8y ago
Adding on as one of the PicnicHealth founders. Unfortunately, the kind of experiences described are extremely common in transfer-of-care settings. When we were starting PicnicHealth, my grandfather was in-and-out of several different ICUs. Preventable mistakes when moving between facilities and providers — inadvertently changed medication dosages, missed therapy regimens, un-transferred test results — created health emergencies that kept pushing him back further and further from recovery. He ultimately passed away. We had these problems around information management and transfer even though my dad (my grandfather's son) is a doctor, and was continuously in touch with the different care teams. Without a central, complete source of information, things will always get missed. Patients and doctors deserve solutions to this problem today. Like the author said, you can only piece together a patient's medical history if you're willing to deal with records in any form, including faxing and scanning paper and mailing CDs. It's hard, dirty work, but it's the only way to get everything together. PicnicHealth does this so patients don't have to. And gathering the records is actually just the first part —you need to structure and normalize information in the different records so it's possible to do things like view trends and use control-find. Full electronic interoperability is slowly coming, but it's been slowly coming for more than 20 years. I would be shocked if in 10 years faxes aren't still being sent. We need to push to make interoperability happen as quickly as possible, but in the meantime patients and their care can't wait.